We are delighted to have been able to support the HSE and HIQA with AIIHPC and Carers Ireland in the drafting of the National End of Life Survey. We hope the survey will give people the opportunity to tell their story on the care provided for their loved one at end of life. The care people receive at end of life and how that relates to the wishes of the person who has died has a great impact on the grief felt by those left behind. The survey aims to learn from all experiences to improve end-of-life and bereavement services for all. We encourage people to complete the survey but we do know how difficult it may be and advise those finding it upsetting to take your time, you don’t have to do it all in one go, do what feels right and if you need to talk to someone reach out to a friend or family member.
We take this opportunity to remind you that anyone who has been bereaved at any time can call our Bereavement Support Line on 1800 80 70 77 between 10am-1pm weekdays.
This survey asks people who have been bereaved about the care provided to their loved ones in the last months and days of their life. The aim of the survey is to learn from people’s experiences of end-of-life care in order to improve the services provided both to people who are dying, and to their loved ones. The findings of this national survey will provide valuable information on the standard of care provided at end of life, acknowledging what is working well and identifying areas where improvements are needed. Service providers such as hospitals, hospices and nursing homes will act on the findings and introduce improvements at local and national levels.
People who have been bereaved and who registered the death of a family member or friend that occurred between 1 September and 31 December 2022, will be invited to participate in the survey. They will receive an invitation letter and survey questionnaire in the post between March and May 2023. The questionnaire can be returned in the post or completed online at www.yourexperience.ie.
The National End of Life Survey contains 110 questions on topics such as pain management, respect and dignity, emotional support, communication with healthcare staff and the provision of information.
Speaking of the launch of the survey, Minister Donnelly said:
“A bereavement leaves a huge emotional loss. Knowing that your loved one had a high level of care near end of life provides some comfort during this most difficult time. Today, the National End of Life Survey is launched. This survey focuses on the experience of care provided to the deceased person at end of life from those closest – such as a family member, friend or relative.
We want to learn from people’s experience of end-of-life care – whether in the hospital, hospice, home or nursing home. I appreciate that it may be difficult and emotional for people to complete this survey but would encourage those who are invited to take part, to participate. The feedback from this survey will be used to improve services both to people who are dying and to their loved ones. This will ensure that we all have the best quality of care in the last months and days of life.”
HSE CEO Bernard Gloster said:
“This is an important survey. It’s the first time that a national survey will be carried out on the experience of care at end of life in Ireland. We know that for bereaved families and loved ones, completing this survey may be difficult, but we are grateful to them for being willing to share their insights and experiences. It is only by listening and learning from the experiences of bereaved families and loved ones that we can bring about effective and sustainable changes.”
HIQA’s CEO Angela Fitzgerald said:
“Through this new survey, the first of its kind in Ireland, we ask people who have been bereaved, about the care provided to a family member or friend in the last months and days of their life. The loss of a loved one is a major event in the lives of bereaved friends and families. While taking part in this survey may, of course, be difficult during such a challenging period in peoples’ lives, hearing directly from those who have been bereaved is vital to the success of this survey.
We want to learn from people’s experiences of end-of-life care provided in hospitals, hospices, nursing homes and in the home, and to improve the services that are provided to people who are dying and to their loved ones. The responses that we receive as part of this survey will help us to ensure that the dignity of people who are dying and their loved ones will be at the centre of end-of-life care in Ireland.”
The National End of Life Survey is part of the National Care Experience Programme – a partnership between the Heath Information and Quality Authority (HIQA), the Health Service Executive (HSE) and the Department of Health. To find out more about the National End of Life Survey, visit www.yourexperience.ie or follow Care Experience on Instagram, Twitter and Facebook.